Behavior Challenge Thread

[mechurchlady]

Sue can explain better but I personally think they should test without asking the person to be free of certain foods. The best thing is elimination diets. You can also give the kid a pure form of a food like milk, soy oil, wheat germ, peanut oil, and pureed foods. The purer the better. Complex foods like cookies may take a while to break down and there could be other allergens in that food.
Look for changes like hyperness and mood changes and see if their pulse races or if the kid changes. In her case the ears turned red which was an indication of a problem like doing lab in chemistry class.

I have had my hand go numb from being covered with brown wheat filled gravy. Ooh that feels good until it hit be what was happening.

 

[DisDreaminMom]

Hey, guys! Been busy moving. Finally hooked up computer and it works (whew!). Anyway, a couple of things.

First, I am way past the "cop out" as far as DS's sleep pattern goes. My plan is to let DS have TV on during weekend and I brought a recliner up to his room so on weeknights I can sit up there with him until he falls asleep. I can read, needlepoint, etc. Sometimes the path of least resistance is the best.

Second, I think we need to encourage our newest member (the lady with the step kids-we need a nickname for you!) to learn to differentiate between her childrens' behaviors that are learned versus those that are innate (possibly ASD). I was thinking that the stealing, bulimia, etc. are problems of "nurture" that need to be addressed completely differently than any psych diagnosis (or "nature"). And I agree (as always) with Bookwormde- this is complete nonsense- this alphabet soup of problems. I didn't even think you could diagnose schizophrenia until late teens or early twenties. (Good God, every kid with an imaginary friend would get that diagnosis at some point or another). Just because parent has diagnosis does not mean kids will. That's a cop out. And how do they not know parent has ASD or other problem? I guarantee Dr.'s listened to story and gave easiest diagnosis they could. They figure all you want is SS benefits. (I'm not being mean, but this is just how life is).

Third, my sister's DS (6, same age as mine) is considered completely "normal". I knew he was a little moody, and my sister seemed to coddle him a lot, but when my DH lost his job and we had to live with my sister's family for 3 months, I saw this little boy throw rages that make my kid look like a kitten. Her son became completely unglued at the strangest times. He was stealing, very destructive, constantly sick, etc. He was a danger to those around him (no joke-kid scared me to death). I pleaded with her to have allergy testing done on him. I took him to my allergist, an old Army doctor, and had to beg my sister not to take her son and leave when she saw the "scratch test" (she was afraid it would make her kid go nuts again-which he did not). Anyway, long story short- he was incredibly allergic to gluten. They did an elimination diet and within 2 days of being wheat free, the child was completely changed. Now it's six months later and my sister thanks me all the time for making her do this. She can tell within 20 minutes if DS has eaten some wheat. He ate his sister's pizza crust and knocked down a six foot bookcase (he's very small- just weighs 40 pounds, so you can imagine how freaky that is). Another time, the neighbor gave him Triscuits and he took a pair of scissors and cut off the flowers of every single plant in his and the neighbors front yard. Don't ask me about what he's done to his pets...We now work very hard to keep everything wheat free, and the kid even is aware of it now- he's very diligent about what he eats.

I'm just saying- look carefully at all the foods your kid eats and check out some books at the library about food allergies. Just because it's "normal" doesn't mean it's good for you. My DS goes nuts on Red dye.

Take some time and explore the hospitals in your area and get those kids checked out by someone that can hep them. In the meantime, try an elimination diet (1st wheat, then dairy, then food dyes, etc.) A good allergist can tell you very quickly, but much of it you can do with trial and error.

This is YOUR life here. These are YOUR kids. This can be a whole lot better and you can feel like you are in control of the situation or you can be scared of the kids. I think you are a smart cookie to take all this on and ask questions. All of us here have had to fight and ask and research on our own. Our lives may not be "normal", but we make the best of things and change plans accordingly. Good for you and your DH for helping those kids. They are still young enough to be taught, know love, discipline, comfort, and more love. You have a huge challenge, but you sound like you are aware enough to be the hero in that sad story... Big hugs. Does DH feel like things fell apart while he was away? I can only imagine...

 

[BeckyScott]

ireland nicole, you can go either way on it. Either do the labs first, or try it on your own and see. Trying it on your own first is cheaper. Also, most DANS will want you to do that, first thing, anyway, even before they've done any labs. I went ahead and took Justin gf/cf before the first DAN appt. Actually, I was in process of taking him gf/cf, I did it gradually not cold turkey, so he wasn't 100% but getting close.

The way I did it was to start replacing products as we ran out of something. When we ran out of milk, I bought rice milk. When we ran out of cereal, I bought gf cereal. I did buy some stuff up-front like rice flour (since it would take me quite a while to run out of real flour) but most of it got replaced one thing at a time.

Another thing I did, might not be necessary for everyone but worked for us, some of the foods I did a week's "break" when I converted over. For example, the cheese. We had regular cheese, then ran out. And then went for a week without any cheese in the house, before introducing the new cheese. DS was so happy to get cheese, apparantly he forgot what it tasted like. I also made a point to buy some extra yummies those weeks, food that was safe but were treats. Then it didn't seem like such torture.

Some people knock out the dairy first, because it's the easiest, then start on the gluten. We kinda did both at once. There's also a learning curve for Mom to get used to how to cook that way (cause rice flour doesn't act like regular flour and rice milk doesn't act like cow's milk). There are also some prepared foods and mixes that are awful, like there's a macaroni and chreese mix that is nasty nasty nasty. We tried 4 or 5 different pizza crust mixes before I found the one DS liked. I used to only make bread machine bread but lately have been buying it pre-made, it's more expensive but less hassle, however if you like to bake you might really like making the bread yourself. But one thing at a time, your kid probably is self-limiting with food anyway?, and you just have to come up with stuff to replace what he likes now, you don't need to start manufacturing 4-course dinners.

If you go completely dairy-free and your kid doesn't do veggies, you'll probably want a calcium supplement.

The gfcfdiet.com website has a directory of safe foods. If you go to the bottom of the front page (where they're trying to sell you stuff) and go to the "index" or "directory" I think it says, there is a huge huge listing. Some school supplies also have gluten, so I printed those pages out to take to the teacher.

 

[mechurchlady]

IrelandNicole there is a great GF bakery in San Antonio that will ship you pizza crust, baked goods and stuff. Aussie Bakery over by that big park on the north side of town off broadway. I died and went to heaven. I got photos from that trip somewhere.

Hugs Becky and yeah what Becky said is a good plan.

If a person is sun sensitive a doctor would say to stay out of the sun then see them. Wait you are full of allergens so keep eating them and see me in a couple months. Where is my broom to smack some idiots.

I have had no fast food for week or more and am feeling a lot better. Don't ned no stinking doctors to tell me that.

Time for hugs and chocolates.
Laurie


========================
I am melting down right now. I have had to cancel the New Hampshire trip. I have to plan a trip to Disneyland so I can start over there and am overwhelmed as I cannot afford to rend a van to get the ECV from my house or stay at a hotel across the street. I need to get an ECV into the parking lot and have people I trust go with me in the park. I am worse that 10 kids when I am bad. The E drive has dissappeared. I have little memory on C Drive. Mom demands I go to the store instead of sleep. I wish I had my own private bathroom that wor5ked. I paid over $700 to Calvin and the hospital who has not got their check so we have 10 days and only about $150 but need ore probably.

It is not fair that Calvin is on the cruise while I am stuck with mom. Life is not fair an dI stink, literally. I need a bed as this has been broken for 9 months and is hurting my rump. I need a rant. Rocking and crying and when I just get my health back and nerve to go to DLR and stuff again another wammy.


hugs
laurie

 

[sleepingbean]

I can recommend the book by Julie Mathews called Nourishing Hope for Autism to delve into the diet question. She covers all the main autism diet methods with their sucess rates, descriptions, how to and whys. It's an all in one kind of book.

We started with removing dyes/artificial colors and eating healthier whole foods. Then we went gluten free casein free (and we still eat that way). BUT Bean did need a bit more gut healing then that, and we even delved further into Specific Carbohydrate Diet for a short time to allow her gut to heal, which worked wonders for her!

The GF/CF approach is said to work for 65% of people on the spectrum. Numbers for the Feingold approach are over 55% reporting success. SCD had high rates of success as well, but you can't easilly do all of these different diets at once. Best to start with one.

With the GF/CF, if your child LIVES off gluten and dairy and that is ALL they eat, that may be an indicator that they are reacting to it, as for those with difficulty processing the proteins react with addiction to those very foods that are not digesting properly. It's strange! I know I had a severe dairy allergy and I always craved dairy. It seemed like the only thing to help my stomach, even though it was truly the only thing causing me chronic acid reflux and ulcer. So, I can somewhat understand that.

The diet connection is my area of specialty in my work, so I had to chime in! Hope I didn't get too far off the original topic!

 

[Brightsy]

I have a question about the GF/CF diet. My younger son (HFA, 7 yrs. old) seems like he might qualify as being addicted to such things. He pretty much eats cheese (mac-n-cheese esp., pizza and such), bread, loves milk and Yoo-hoo and go-gurts. He also eats peanut butter, occasionally chicken nuggets, and really likes lunchables (the little circular lunch meats are the only lunch meats he'll eat). Yet he has NO problems w/ digestion... no stomach aches, no constipation (although his stools can clog a toilet like you wouldn't believe). I've talked w/ his Dr.(s) about the diet (btw, as a military family my son has seen several Dr.s) and they all seem uncertain about any benefits he might get. When I say he has no GI issues, I mean none that we've seen. He's not gassy, he poops ok, he doesn't seem to have any problems of anykind with eating the foods. But he sure is picky, he won't eat fruits or veggies, at all, the only fruits we can get into him is from Juicy Juice or such.
I guess I'm wondering if anyone here has had experience with this kind of thing.

 

[bookwormde]

Brightsy,

What you describe is what is a typical aspie diet, we did a thread last summer and the similarities were amazing; my child was a bit of an outlier because he is a vegetarian (boy does that make it fun).

One thing to remember is that changing a diet does nothing different for our children than it does for neurotypicals, it is just that with the challenges (stresses and anxiety) that our children face, the benefits have a greater impact.

If there is a GI issues with constipation (which is somewhat common due to the aspie diet) for a limited percentage of our children this helps greatly with limiting episodes.

bookwormde

 

[BeckyScott]

Brightsy, my youngest can still clog a toilet and he's gfcf. Which indicates that he probably still has gi issues. I swear I've got that toilet plunger out every single day, I cannot believe that this is what my life has turned into.

Anyway, I was told by a well-respected ped that the gfcf wouldn't do us any good, because DS wasn't bloated/extended. I think she was looking more at celiac. I listened to her and I shouldn't have.

DS still eats the "autism diet" only it's the gfcf version. Rice noodles with fake margarine and fake parmesan. GF chicken nuggets. Tapioca bread. Fake cheese. Fake pizza. Chips and French fries. Juice and an occasionaly banana. Still can't get him to eat veggies. Some kids open up to more foods after going gfcf, mine did not. I was very concerned that he would not fall for the substitutes, but he is hypo-sensitive and I think it worked in our favor, as he wasn't picky about the textures.

I have found a new doc (who is not exactly a DAN but uses the same approach) so I am going to get some new input and see if we're missing something.

 

[DisDreaminMom]

OK, now that the thought of clogging toilets is out in the open, I have a hum dinger of a question for you.

DS is refusing to wipe his rear after #2. He did for a while, or at least tried, but lately has totally given up on the idea. It used to be he would ask for help when he was at home and try to wing it when he was at school (or maybe just try not to go). But he had an "accident" a couple of weeks ago where he was at cousin's house and was too embarrassed to ask for help, pulled pants up, and made a huge mess. Today I picked him up from school and could smell him. I am so sick of wiping this kid. He's 6, for Pete's sake. He always says, "I'm just a little boy. I'll wipe my rear when I'm 18!". I know he could do it if he tried and it's not like we haven't helped him or shown him repeatedly how to take care of things. He was a total bear to toilet train. He had the whole phobia turned into obsession with toilets. I guess I should be glad of no more diapers (though he does wear them at night because he's a heavy sleeper).

Any suggestions? I did try the pre-moistened wipes and he could have cared less.

About the GF /Casein free diets- DS has a bloated tummy. I read that most AS kids have one. He also has acne on his arms. Think this is worth a try? He never had stomach complaints and eats a very well balanced diet (veggie lover and eats a ton of fruit, but lives for dairy and pasta). Do you think most people should just try this as a matter of life with AS? Bookewormde?

Thanks for the info from the nutrician. I don't think it's OT if it affects behavior.

 

[sleepingbean]

Brightsy,

One thing to remember is that changing a diet does nothing different for our children than it does for neurotypicals, it is just that with the challenges (stresses and anxiety) that our children face, the benefits have a greater impact.

bookwormde

this is not exactly true, although I think I get what you are trying to say (or maybe I just misread it!). The dietary changes help with children on the spectrum for a host of reasons that are specific. Research and studies keep coming out with new insight on this, but just a few specifics: some ASD kids just can't detox in a normal way, some cannot process proteins in a typical/normal way, and some have issues with sulfation and phenols. There are factors playing out within the body that explain why there are such high number of success stories with dietary intervention, but the reasons vary from person to person based on what is going on in their particular system, what they have been exposed to, and so on.

There is an issue with the neurological component of autism, inflammation, and gut dysbiosis. Some good reads on this are the pre mentioned Nourishing Hope by Julie Matthews and another good one to understand the gut dysbiosis is Digestive Wellness by Elizabeth Lipski. And one that ties these together is Changing the Course of Autism by Jepson.

Of course, that is not to say that "typical" non spectrum kids don't have gut dysbiosis, candida, or leaky gut, as that is very common for anyone who has been on antibitiocs, or who does not eat a healthy diet (which I imagine would account for most kids, with the first of those, and many kids with the second).

 

[bookwormde]

I have read a lot of the works in this area and from a scientific point of view there are lots of correlations but not evidence of direct cause and effect from the base genetics of Autism. What does happen is that some the characteristics that manifest themselves, particularly because of sensory variations, create nutrition anomalies which cause issues which are sometimes helped by some of the dietary modifications. However this would provide the exact same benefit to a neurotypical with the same dietary or any other issue which is not directly linked.

As I said the big benefit is that the neurological changes that can be effected by diet produce much more beneficial and pronounced improvements since so much of the issue we deal with are anxiety based.

In the end it is just about what is beneficial for your child and changes in diet have been very helpful in some cases particularly with anxiety triggered behavioral issues.

bookwormde

 

[BeckyScott]

Okay, butt-wiping. We usually do not have a problem, as due to the toilet-clogging nature of the event, there isn't much "residue" to be wiped. (I cannot believe I am discussing this) On the occasion when it is necessary, I am called in for duty at home. I do not know what they do at school, but he's never come home smelly. Since DS does tend to camp out on the toilet for extensive periods of time, the para should have a heads-up that he could need some help, maybe that's how they handle it.

Anyway, funny story. Usually I leave him alone in the bathroom but one day he had to go and I was in there brushing my teeth. So he goes. Then he stands up, turns around and looks in the toilet. He pulls 3 squares of toilet paper off the roll, crunches them in his hand, and drops them into the toilet unused. And then pulled up his pants and flushed. I have noticed this several times since, that is his routine. I have no idea what he's doing.

So DisDreamin, I am no help. The few times DS has actually tried to wipe his butt, he's made a big mess doing it and I've had to go in and fix it.

One thing we do have a problem with is the #1. He can't manipulate the snaps/buttons on pants. We have a few pairs of elastic-waist pants, but most of his pants are regular jeans that have the elastic size-button thingies so there's a little stretch but not much. When he goes pee, he does not unfasten his pants. He pulls at the waistband until he can get everything out where it needs to be, and goes. What this does, though, is that his aim is completely wacky. Fine if he's at a urinal, but a regular toilet he pees all over the seat and the upright seat lid and usually a little on the floor. What do you all do? Just do nothing but elastic-waist pants? They're harder to find as the kid gets older, except for sweat pants. The pants he has, he is able to completely pull them down if necessary, he wiggles and pulls, because of the elastic in the side he can do that, for #2, although he has a hard time getting them back up. He is sort of pudgy so his waist is about the same size as his hips.

 

[KirstenB]

Becky, I haven't been here in a few days, but I saw your thread about Richard, his friend and playdates. At the risk of further complicating your computer use matrix....I'd give him a once-a-week break from the ticket system only when his friend is over. Meaning, once a week, he and his friend can play on the Wii, computer, whatever. If his friend comes over 2-3 times a week, he has to use the tickets if they want to play computers.

I'd want to encourage the playdates, but not at the expense of your system. I'm thinking compromise.

 

[Brightsy]

(snipped for brevity)

One thing we do have a problem with is the #1. He can't manipulate the snaps/buttons on pants. We have a few pairs of elastic-waist pants, but most of his pants are regular jeans that have the elastic size-button thingies so there's a little stretch but not much. When he goes pee, he does not unfasten his pants. He pulls at the waistband until he can get everything out where it needs to be, and goes. What this does, though, is that his aim is completely wacky. Fine if he's at a urinal, but a regular toilet he pees all over the seat and the upright seat lid and usually a little on the floor. What do you all do? Just do nothing but elastic-waist pants? They're harder to find as the kid gets older, except for sweat pants. The pants he has, he is able to completely pull them down if necessary, he wiggles and pulls, because of the elastic in the side he can do that, for #2, although he has a hard time getting them back up. He is sort of pudgy so his waist is about the same size as his hips.

My lad has the same problem w/ #1. He, also, is a little pudgy. He wriggles his pants down and then usually needs help pulling them back up. He pees like a fire hose. After he's done I usually have to go in and do some wiping up. It gets EVERYWHERE! Now and then I'll not notice he's gone before me and have had a wet surprise when I sit down! Ugh! I've gotten into the habit of leaving the seat up.

 

[bookwormde]

KristenB

I think your point of some variation from the rule when it involves a “social event” might be well warranted, since the extra effort that these social events often involve are enhance by some structural encouragement. Of course every child is deferent so the structure must be adapted to the needs of the particular child at a particular time frame.

And yes, occasional “misfires” are an issue for us particularly during the night.

bookwormde

 

[BeckyScott]

Well we are having other issues with Mr. Play-Date Friend anyway. I wish I were one of those moms who willingly takes on the troubled children of others and becomes some sort of mom role model, blah blah blah, but frankly I'm too tired for all that.

I think we are going to have to go with letting him play without coupons when he has company here, but only once a week and only for that after-school window of a couple hours. The only issue, which I'll need to work out, is that the two of them tend to "gang up" on Justin, so he doesn't get a turn. I think even if I let go of the coupon thing, I'll still need to put a time limitation in there. The downside is, of course, if they're on the Wii at least I know what they're doing. The problem I'm having is that when company arrives, both children completely lose their minds. And yes, I've sent the company right back home. I think Mr. Play-Date has some issues of his own and honestly I've got my hands full enough. So it's more than just using coupons or not, although I do need to figure out what to do about that.

 

[KirstenB]

Okay, you guys are cracking me up with the bathroom issues. I was actually going to ask how you got your ASD child to potty-train. Now I'm thinking it's overrated....we can live with diapers for a while longer.

Becky, sorry about Mr. Playdate Friend. You have enough drama without inviting other people's drama over! Our youngest is too young to worry about playdates much yet. We've definitely had lots of mostly good, but sometimes crazy playdates over the years with our older dd.

 

[DisDreaminMom]

Beck and Brightsy- I could have written your exact words. I have to get pants for school uniform from Sears- the Land's End brand. They are the only ones with an elastic waist that resemble actual uniform pants. I am half bald from pulling my hair out every time DS pees on the toilet seat or off the whole target. It's like nails on the chalk board.

And Becky- here's the deal- I don't know any mom's these days that aare in the mood for adopting an ill behaved child. It's hard enough having our own- I don't feel the need to complicate things with more...

 

[mechurchlady]

Make a game out of it like Potty Pot where each time he cleanly makes it in the pot he gets a reward such as a poker chip in a pot. When he has had 10 stars he gets one treat or whatever. Near misses like hitting the toilet seat is a worth a third of what a potty pot token iw worth. You chould even do three tokens for a bullseye, 2 for a dribble and 1 for on the seat but in the pot. Hit the floor and he gets nothing.

Question of the day for those NTs out there?.
Mom and dad are left handed so I am a leftie. Mom is a confused leftie, dad was a beat into rightie and I am a confused ambidextrous. I was sitting in the restaurant and was looking at the set up. Here is my question for the day to stump the NTs out there.

Whe do we have to have the cup on the right and silverware backwards? Why should the spoon and drink glass be on the right if I am left handed as it means changing hands for the spoon and leaning over the plate to get stuff.

Hugs and chocolates and I will leve the coffee maker on for Becky.

 

[Minnie M6]

Aim problems here too.
And, DS always denies getting the seat wet even if I go into the bathroom directly after him.
He also isn't dry at night. It's rough for him, especially during the rare sleepover.
As far as pants go, DS almost always wears track pants/ sweatpants. He has jeans but hates pants with buttons so he always opts for comfort.